Friday, December 24, 2010

So, I don't really buy "new" clothes. New undies and socks yes, but I've bought most of my clothes second-hand since Wash first got sick and stopped working.

My parents taught me from an early age that there are always people who are less fortunate than we are, no matter how low it gets. They taught me that sometimes giving up some "luxuries" for a period to be able to give something to others was a just cause.

I normally do an "adopt an angel" from the Salvation Army tree - I take the savings I would have had on the difference from new clothes to used and provide a kid or two with gifts for Christmas.

I didn't this year; I honestly just was not sure of funds and I didn't want to make a promise to a kid that I couldn't keep.

About a week ago I had an idea; take the extra funds left from some gift cards we had laying about ($3, $6 etc) and buy whatever little toys we could. Wash and I did just that the other day. We brought them down to our local Fire station and the guy's face just lit up as we dropped them off. Our city has quite a number of needy families this year, and not as many donations. Sure $6 would get me 2 gals of gas, but it also means that a child can believe in santa/miracles/magic for just a little longer.

Living with Wash helps to change and focus my perspective. Some times the present is just as important as what the future might be. Adulthood and maturity are a time for worry and cynicism, not childhood.

It makes me happy to know I put joy, even just a little, into the world.

Wednesday, December 22, 2010

GREAT evening. We went over and did a Christmas evening with friends.They all LOVED their gifts, and my friends got me a Calphalon cake/dessert cookware and storage set. So I can bake cakes, brownies etc and have the Calphalon tupperware too! It's so lovely and perfect and very useful. I'm happy.

We trimmed another tree as a group, and played some fun board games. Even made some good hot chocolate.It was fun, I laughed, and Wash assures me I did not make any social mis-steps tonight so I even feel a little bit good about going out to socialize.

It's a good day.

And I still have Wash at the end of the day. I really cannot ask for more.

I had a rather fantastic evening with my Wash last night. We had some new (gamer!) friends come over and hopefully now have a few more people to hang out with and to play with us on Games Night or to play 40k with us.

Wash and I spent a fair amount of time cuddling.

I also had a really awesome dream wherein I met Patton Oswalt. Oh, Wash was there too. I think we were all in an airport or something.

Tonight we are doing the first gift exchange with friends and also get a visit from a couple that we just adore. I'm fairly sure they adore us back. They live a couple hundred miles away so it's always nice to see them in person.

Tuesday, December 21, 2010

I have to make a decision I don't really want to. Or, more that I agreed years ago with the decision, put up with flak for it for years, and now have to defend it at the possibility of losing a family member.

I know that's vague, but I don't want to talk more about it until I have made some more decisions.

I need time away from Wash to wrap his gifts. He literally is almost never out of my sight, so finding more than 3-10 mins away is a bit of an issue. Gorram it.

Tried to see the lunar eclipse last night; cloudy. This is my disappointed face.

My confession for today? What haunts me is that I know given enough time and resources, I could probably figure a cure for GBM. Maybe. But I will never be able to do it and save Wash. I just cannot "save" him.

Our first Christmas together he went and found a copy of a game that was made in the 1970's that I loved to play. Found a new one and got it for me as my present.

Sunday, December 19, 2010

Neighbours decided to use their place for "band practice". Nos. We have shared walls. You are practicing amp flourishes. Just, no. Asked them twice to turn it down. So... I plug in my home theatre speakers and blast "Scotland the Brave" for a half hour. Bagpipes win.

According to Wash I've been having more tics lately. I'm not really aware of these until someone tells me, so now I'm all stressed over trying to figure out what I'm stressed over.

I fought and managed to keep my health insurance and food stamps for my family so we can eat for the next few months.

I have the car in a semi-working order (we found out yesterday the heater AND A/C now are bust. I will have to figure out how to fix and pay for it, or else I need to figure out how to get a new-er car. Betty is going to be 15 in 2011. That's a good life for a car.

I have been able to see and speak to some friends this week and have been cooking up "Holiday Cheer" and making my home smell delicious.

So, I wonder what my new or bigger stressor is now?

I had someone speak to me this week; the conversation started off well enough, X was trying to give me some support- "I can see that you do have to work to take care of Wash and I see that, maybe no one tells you that."

That part, all true and good.

But, then, somehow X got onto this point... "I'm not here to judge you. But you need to figure out what you've done wrong(in the past year since Wash's been sick). You have to fail and make mistakes, and you just won't learn until you do. You need to think hard until you figure out what mistakes you've made and correct them."

.......... What?

So, all that personal therapy I've been undergoing and the issues I have been trying to let go of... back.

Why of course I've made mistakes, I let my husband develop brain cancer until it was too late! Stage 4!

And I have such control of course it's been my fault every time there was a medical frak-up, or his insurance was cancelled...

And my biggest mistake, oh, why that just has to be deciding to have my gallbladder get infected and melt. I just adored being in the hospital unable to work or care for Wash.

I just.... how the hell am I supposed to speak to these people? I have kept my husband alive for well over a year now. Believe me, if I had been making more mistakes he would be dead right now. His life depends on how correct, how efficient I can be, how close to it I can get.

Ohhhhhh.

I don't understand when people talk around a subject. If you feel I did something, say it. Otherwise I spend days suppressing my own immune system feeling like shit trying to imagine all the "wrongs" I have done.

So, frak that crap. It's a very Tennant Christmas over here and we are snuggled in against the cold, I make hot mint-chocolate to drink, and we have cats to cuddle with as we watch the new Dr Who dvd's we got as an early giftmas gift.

Wednesday, December 15, 2010

There is a lot of shit-talking going around my State right now about health care, and funds, and who should live or die- and who really is getting to make those decisions.

I just wonder...

Do you all think that Wash wanted brain cancer? That he chose to have a softball sized tumor in his head? That somewhere along the line he went, "Oh awesome I just got married and am close to graduating college with a high degree- now I really want to fuck it all up and permanently loose my memories?"

He was not covered by his parent's health care. I did not get insurance through my job. We used the campus health services. We used the community health services.

Not one of them caught the cancer or tumor before it hit stage 4.

There was a 1 in 43 million chance of this happening. How do you prepare for something like that?

I'm waiting for a 'charity' to step up and provide us income for a year. Or some Church. That is what my State and its representatives have told me. They won't help, the Federal government won't help (too young and no children- sucks that you're infertile, you get to be poor too!) there has been no "community" - aside from what I beg for. I still remember the AHCCCS judge saying to me back in May, "We can do nothing for you, have you thought about moving to Canada?"

My own State would rather me be another country's problem.

We are young.

We have no children.

We cannot work.

We do not receive assistance outside of food stamps. Starvation is a worse death for him.

Our State turned us away at every turn for help.

Why do Republicans and Conservatives say this is my/our fault?

How many young 20 somethings from a lower-class background working through college have $700,000.00 set aside for medical care, operations, hospitalizations, medications, Hospice, bills, joblessness/ inability to work, self sufficient funding for the rest of your shortened cancer stricken life?

Mostly been keeping busy and buried in paperwork whilst Wash sleeps off the chemo this week.

He's up for maybe an hour or so in the mornings, sleeps through the afternoon and is up from 6-7ish to 1am or so. It's frakked up his sleep cycle something good.

We have friends in town, and more coming in. It's really wonderful and I know Wash is happy to see them all. He can't really remember when the last time he saw/spoke to most people was, so it's always a happy event for us to have friends over.

It's taking him some adjustment though to get used to the idea that the status quo he's been going by for 13 months now might not apply anymore. The conversations we have are some tough hard words that I really never intended to be saying when I was this young. He talks of travel, of Hospice, of his lost friends, of wanting a legacy...

It's holiday time though so we have friends in, and it's getting colder (in theory- I live in AZ. Hit or miss) so there's more ... incentive for me to spend my days in the kitchen messing around with new recipes; right now I'm working on cranberry breads and a type of Red Velvet Brownie. It's also a great excuse to help Wash pack on some more pounds. He's finally averaging over 150 lbs, which is great- this time last year he was around 137 ish. I'd ideally like to get him back up closer to where he was in the 180s- but that included a lot of muscle mass he's lost in addition to the fat. His body has changed a lot as a result from the cancer and chemo.

I've been battling with AHCCCS and DES to prove to them that since Wash is still alive after 12 months he still does have brain cancer and he's lucky he's still alive - so far.

It feels like something acidic eating away at my insides every time I have to explain again and again that yes, he is still dying, and yes, he is impaired and will never work again. Last week the GBM community -among many others- lost a great heroine to me, K, who had lived over 5 years with GBM 4. I cannot even describe what I choose to take on just in the hopes Wash might live 5 more years.

It's hard for me. We don't really, can't really, talk about the person who should have been here with us this Christmas. I am not sure what pains him more, losing me or losing the chance we had to ever have a child. I don't even know how much he really thinks on it, or if like me, it just hurts too much on top of everything else to ponder on. It's like a wasp sting when I see children or my pregnant friends. I can't really help it. I'm still able to be happy for them, it's easier for me now to be happy for them, but it just underlines more to me what it is I have to face. What I already have lost. Is there a point to extended life if the next generation will not know, remember, or care for you?

We have the tree finished with the trimming. Coloured lights, twinkling... candles around, sweet smells in the air... I have to try and be happy. Think of all the good that we still have. The good we can still do for others.

Thursday, December 9, 2010

Someone's been slippin' Hope and Positivity into my food and/or drink. I swear. The shit keeps raining down, but somehow I'm feeling fairly good through it.

Wash is on his last chemo cycle for the year. Hoo-rah. However, he went all crazy about it about a week ago so I've been dealing with him for a while... my patience has not been the best this week. I get frustrated when he freezes up and says anything he can to fill the space. Most of the time he lies. I know it's part of the cancer. Part of the surgery. Part of everything that is wrong and inhuman about brain cancer. I hate myself for it too. I hate that I still hurt when he lies like that, and I know he's not even aware of it happening... it still hurts. He is not doing it on purpose, and I honestly think he doesn't even know half of what his brain makes him do or say.

I still hate thinking about the future. I had an idea this week, something that I've put feelers out on and something that could grow into my own personal business in a year. Something that I could do and be happy about. It's wonderful, and still painful to think on.

When we married we exchanged parts of ourselves with each other. So, it feels like there is a part of me that is dying along with him. I don't know really if I can live another 40 years being happy with a half heart. Maybe.

The cup overflows and I am still stuck looking for where the liquid is coming from!

When I first met him there was a resonance between us. After he dies, it will be a slowly fading echo of a sound. Of a feeling, his touch. How long before I forget what his voice sounded like? Or how his hugs felt?

How do we quantify the time spent or lost with someone?

Existence continues on. Time does not stop; though in theory it could move around. He matters to me. He exists as I recall... but even I know it's a facsimile of an echo.

Despite the overtones, I have been cheery. We got the tree lit. The kittens continue become less aggressive toward each other and more friendly and cuddly. Leto still tries to groom Aelphie when he catches her asleep.

Monday, December 6, 2010

This shall be brief as I still have to do my last class and turn in my two papers today. Also, kickass and go me for getting my Finals done and whatnot!

So, I got a call from the gal who manages the donations the Fraternity (Alpha Rho Chi APX) and a bunch of you kind people under the auspices of a wonderful blog donated a large chunk to us. I am still mostly speechless, so I will compose myself and write more on this later.

Right now I'm just amazed by the kindness of strangers and the thankfulness I have. You all are taking the worry off for about two months; utilities, heating, a portion of Wash's medication, Doctor Co-pays, Gas to get to the hospital, Warm hats for Wash, socks for me, cat food...

The relief of not having to worry about some things, at least for a little while, it's one of the best gifts I could get right about now.

So, this Hannukah/Christmas so far I have gotten to celebrate crossing the 13 month mark with no tumor recurrence for Wash, booked my birthday appointment for the Gal's Salon day (and even the Wash-sitting is taken care of!) got pumpkin pie, 2 new tires, and a load of stress taken off me financially so I can focus on the mountain of paperwork I have to fill out affirming that Wash is still alive, but still dying of cancer so he needs medical insurance.

I'll have more to say later, but for right now please accept my humblest thanks to all the donors who have sent help.

Thursday, December 2, 2010

I have been buried in finals these past few days. Will be through the weekend. So much reading and writing. However, it's good for me, and I like the chance to focus on a way to improve myself. I learn with each paper I write.

It's been a long few days.

Wash has been struggling with life lately. His MRI was this week, thankfully and astonishingly it was clear. That makes 13 months since his surgery. Defies odds for Glio. However and naturally it caused a bit of stress upon him. Which then passed along to me. He was not sleeping very well. Therefor, I don't sleep very well. Worry goes hand in hand.

He is on chemo next week.

We spoke to his oncologist. Right now Avastin (different chemo) is not an option. So he can continue his Temodar for another 2-6 months or stop chemo altogether. We're meeting back with her in about 3 weeks to go over his decision. I've told him I'd support him whichever was his choice. That doesn't make it easier for me to do, nor does it maybe make me happy, but this is not about me. That part is about him, his physical body, his Quality of Life and his decision. I'm just there to support him and see his wishes are followed.

He at least has finally agreed to try an anti-depressant. I'm really hoping it will help. He's been listless lately and just overall depressed. The truth he has been running from for a year has finally built a wall he can't ignore anymore. He has cancer. He has a deadly type. He will not live to be 60 with me and be a grandfather. Now, we might get a year or two more. Maybe three. And those can be good years filled with wonderful times. But he is a 26 year old man. He is having to really and finally accept he most likely will not see his 30th birthday. He's been in denial about this for so long. I'm not "giving up" on him nor do I think this means he needs to not live. Accepting his disease allows him to be free of the fears and enjoy what he has, not what he might have lost.

It's hard for me to watch this. It's hard for me period. I didn't expect it to be easy. But I honestly did not know how exhausting it would be. How tiring responsibility is. How much I long for just a break. Not the end, but just a true rest.

I haven't had 24 hours off in more than 14 months. Not even a "day". I've had three or four sets of about 4-6 hours when a friend came and Wash-sat for me. In a whole year.

Just imagine working 24 hour days, 7 days a week for more than a year. No "Saturday" or "weekend" for you. Just the constant care of another human being.

Tiring just thinking of it, eh?

And the rest of my life, the world goes on. I still have to focus and file paperwork, pay bills, beg for donations, beg the State to unfreeze the budget so I *might* get funds, beg the Utility company not to turn the power off, clean, garden, clean, cook, drive, manage, repair and everything else that everyone has to do in their everyday lives as well. No one else stops because my husband is dying of cancer. It's only my microcosm that is effected, the gal on the other end of the phone working for the Dept of Economic Security doesn't care a shit if Wash and I become homeless or if he dies destitute.

It's hard to have to figure out how to explain to him that no one seems to really care. That being a good person is just not enough to matter. That being so young is just not enough to matter. That dying under horrid conditions worrying not only about fighting chemo but fighting to make sure there is food on the table and gas in the car to drive to the hospital just doesn't seem to matter.

To the Governor of our State Jan Brewer he does not matter. She will be responsible for his death and never once think of him as a person. Senator John McCain and Jon Kyl both were solicited to help my husband keep his health insurance when he was in active treatment. Both Senators refused to even return a call or send a form letter. They will not care about his death, or how much he may suffer without medication. John McCain will never have to worry about paying for anti-nausea medication while undergoing chemo. Yet my husband suffered a whole round without any medication to ease the pain of chemotherapy, due directly to Kyl and McCain's voting. Congressman Harry Mitchell told a voter he wanted to meet Wash to "look into" the health insurance issue. Yet he never once made an attempt to do so, even after we contacted his office personally.

These people are legally in charge. Legally they are killing my husband. And he has to live with the knowledge that they do not care at all about him, his life, or his death.

I find it appalling. I find it disgusting. Morally reprehensible. And every one of them has lived decades longer than he will get.

Life is truly unfair.

I have to take joy in the small things. The happy moments. The colours of the sunsets here. The tastes of the tomatoes grown in my garden. The utter contentment of falling asleep next to Wash. Hating those who have what we are deprived of does nothing. It eats at the soul. I can mourn what has been lost. Not what will be or could have been. And I can choose to move on and enjoy every day of life I have with him. We don't have money, jobs, health, or always food; but I am thankful for every moment of life and love I have with him and am aware enough to be thankful for it.

Unconditional love trumps indifference to suffering and death every time.

If you have health, love, home, security... share your good fortune. If you are old enough and outraged enough remember the stance of those elected officials towards the poor, ill, weak, young, and vulnerable. Remember the utter indifference to suffering of the people of this State. Remember and do something.

About Me

I'm a 26 year old former Caregiver. This is my voice to talk about my life- mostly about learning to live now. My husband was diagnosed in November 2009 with Glioblastoma Multiforme- terminal brain cancer. He was only 25 and I had literally just turned 23. He fought hard for almost 3 years before he passed away September 2012, just a month after turning 28.
This was my blog about our life.
This is still my space to find Hope.
This is now my public battle to show what life is like as a 25 year old Widow.